Life post transplant

I have to start this post by saying that I wish I had taken the time or been forced/encouraged to do a bit more research about how I would feel post transplant and the recovery process. The past two months have felt liked I dived into a deep, dark pool with nope hope of finding the shallow end, treading water for my life! I don’t think I really had any expectations of how I would feel post transplant but I do think I severely underestimated just how long it would take me to get back to “normal”. I feel like I’ve had to rewind my life and relearn the simplest of tasks again, not just physically but mentally too.

I assumed I would regain my strength and stamina quickly and easily but I couldn’t have been more wrong. I battle with extreme fatigue and constantly feel lethargic, in the beginning i found that simple daily tasks like having a shower left me breathless and exhausted. Usually when I wake up in the morning I’m very tired, but within an hour or so my energy levels generally increase and I try and get my day going, for the first 30 days I found myself spending the majority of my days in bed sleeping and generally could only manage being up and about for a maximum of 2 hours a day. I was going through quite a bit of coffee just to try and keep me awake for a few extra hours during the day but thank goodness I’m able to manage on my own now.

My first trip in my car was like a driving lesson gone wrong- my legs were so weak that I battled to use the clutch and I stalled more times than I could count! Making supper was an enormous challenge and even opening tins required at least 2 breaks while turning the tin opener around the circumference of the tin. One morning I couldn’t open my purity bottle no matter how hard I tried, I eventually threw it in the sink, had a little cry and waited for our Helper to get to work so that she could open it for me. I couldn’t swallow anything but soup or purity for the first month and I needed to have the purity to line my stomach before taking all of my meds. It’s quite something to feel angry with your body for letting you down, there’s no worse punishment than feeling helpless and wanting to do something so badly but not being able to no matter how hard you push yourself. I’ve learnt to be a bit more patient without myself and often tell myself that I can’t go from zero to hero overnight, it’s going to take time.

I see my Oncologist weekly so that I can be physically examined and I have a blood test before my appointment to check my blood counts for infections. So far my results have been amazing and I haven’t needed to take any additional antibiotics. I take SO many tablets everyday but more on this another time. I have been allowed to go to shopping centres and other public spaces because my blood cell counts have been good but I’m very careful not to touch handles or hand rails and I always have detol wipes in my bag to make sure I keep my hands clean, I also try and avoid crowds and public places during rush hour- germs are scary.

If you can remember back to my last post, I explained how I suffered really badly from an infection in my oesophagus as well as terrible mucositis in my throat, swallowing was nearly impossible due to the pain and this made me so anxious about meal times. I knew that I needed to get food in to help with my recovery and finally take in the nutrition that my body so badly needed but every attempt at swallowing was pure agony, purity and cup of soup became my staples and inbetween I tried to get in as much Ensure as possible. I still haven’t got much of an appetite but I think my tastebuds are also still recovering so food still doesn’t taste like much. I have battled with the diet a little bit just because the foods I do crave are not on the ”yes” list. Also you have to be so aware of what you’re eating and make sure that you have things packed for yourself if you go out. I am only allowed to drink sterile water (boiled in my kettle and cooled) or Oasis water- ALL other bottled or tap water is out. Here is a picture of my Neutrophenic diet I’ve had to follow:

I try to be patient with myself but it’s so frustrating, I see people running past me when I’m walking along and It makes me so sad, I feel like I’m never going to get there! I have managed the 5km parkrun (which we walked) on the Promenade here in Durban for the past two weekends and I loved it, I woke up stiff the next morning and it was SUCH a good feeling. I’ve also started doing some strength training with Gav’s intern, Jarrod, at Prime twice a week and it’ll be interesting to see my progress- hopefully goodbye trembling legs! Jarrod has been pushing me and I feel such immense pride when I manage to do a certain exercise better or for longer than the previous session- yay me! I wish I hadn’t taken my healthy, fit, strong body for granted before I was diagnosed and I wish I had pushed myself further in terms of fitness, no time like the present I guess! 

The Doctors warn you that you will begin to feel the enormity of what has happened to you as you get stronger post transplant and I think I have just entered this stage now. Some days I feel so sad about the time and experiences that I’ve lost out on but I try and quickly push those thoughts out of my mind and replace them with things I can’t wait to do and achieve. I feel so incredibly lucky to have been given a second chance at life- no words justify how incredible this miracle is!

Promenade walk

                                                                

So where to from here? Am I cured?

On Tuesday next week I will have another PET scan to check whether any residual disease is present or if I’m in remission- scary! There is no other way of knowing whether a transplant is successful or not. A very important benchmark in the recovery of transplant patients is the date 100 days after the patient’s transplant, for this we’ll fly up to Pretoria to meet with my Haematologist to discuss my scan results among other things. I will also then be allowed to go back to a normal diet if all is clear!

Always appreciate your body and all that it does for you- you are so incredibly blessed to be able to wake up each morning and to do whatever you wish without assistance or struggle. Push yourself to do something challenging!

xxx